# The Implementation of Cognitive Screening and Educational Support to Improve Outcomes of Adolescents and Young Adults with Sickle Cell Disease: From Clinic to the Community and Back

> **NIH NIH U01** · WASHINGTON UNIVERSITY · 2020 · $704,934

## Abstract

Project Summary/Abstract
Policies that address factors such as education could have a bigger influence on health than all medical
advances combined. Within the U.S., adults without a high school diploma are likely to die nine years sooner
than college graduates. Our team showed that a 15-year-old male with sickle cell anemia who comes from a
low-income family has a 70% risk of failing a grade in school, putting him at risk of becoming a dropout. High
school students who fail even one course are 33% more likely to drop out of high school. These statistics are a
stark reality for the 100,000 Americans who have sickle cell disease (SCD), a chronic hemolytic anemia that
causes organ damage and early death. Over 90% of this population is African American, 60-70% are living at
or near poverty, and they suffer from a chronic disease associated with a high risk of central nervous system
(CNS) injury. Medical advances such as penicillin prophylaxis, transcranial Doppler screening with prophylactic
chronic transfusion and hydroxyurea reduce the risk of death. Despite these advances, median survival of
individuals with SCD remains just 30-40 years, 30-45 years less than the average life expectancy for African
Americans. Our multidisciplinary team addresses cognitive function and educational attainment to improve
overall health of people with SCD. A child with sickle cell anemia, a silent cerebral infarct, and a parent without
a high school education is predicted to have a full-scale IQ 13 points (SD = 15) lower than a child with no silent
infarct and a college-educated parent. The 2014 Evidence Based Management guidelines from NHLBI stated,
“Silent CNS infarcts can present with non-focal signs such as developmental delays or poor or declining school
performance in children or changes in social role or work functioning in adults. Throughout their lives, people
with SCD should be considered for formal neurocognitive evaluation when assessments reveal any of these
concerns.” We hypothesize that better implementation of these recommended cognitive evaluations and
translation to well-defined plans for educational support in schools will increase students’ success in
educational attainment and promote better health. The long-term goal of this application is to improve the
health and academic attainment of adolescents and adults with SCD by implementing evidence based
guidelines for neurocognitive testing and intervention. In response to the Sickle Cell Disease Implementation
Consortium RFA, we propose the following aims: 1) To complete a community-based needs assessment of the
facilitators and barriers to essential healthcare and optimal educational attainment for adolescents and adults
with SCD and their caregivers; 2) To design and implement a novel implementation project based on our
previous work that focuses on cognitive evaluation and educational attainment of higher risk adolescents with
SCD; 3) To participate in the development of a SCD Registry in collab...

## Key facts

- **NIH application ID:** 9961645
- **Project number:** 5U01HL133994-05
- **Recipient organization:** WASHINGTON UNIVERSITY
- **Principal Investigator:** Allison A King
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $704,934
- **Award type:** 5
- **Project period:** 2016-08-05 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9961645

## Citation

> US National Institutes of Health, RePORTER application 9961645, The Implementation of Cognitive Screening and Educational Support to Improve Outcomes of Adolescents and Young Adults with Sickle Cell Disease: From Clinic to the Community and Back (5U01HL133994-05). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9961645. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*